Living with Parkinson’s disease

by Dr. Mark Nicholson

They answered as they took their fees

There is no cure for this disease

I believe in chiromancy as much as I believe in necromancy, which, before you recoil in horror, means not at all. Or maybe I should say I didn’t believe in either. Perhaps now as I grow older, I’m changing my mind, based partly on strange new findings in physics, a tale which I shall leave for another day.

Fifty years ago, I was heading to a new job on the other side of the world starting with a trip (31 hours in the air and crossing the dateline) to Guadalcanal via Los Angeles, O’ahu, Fiji and the New Hebrides (now called Vanuatu).  A day or two earlier I was in a seaside town in southern England (Brighton perhaps?). A man was sitting at a desk on the pier beckoning the gullible to have their palms read for some absurdly high fee like 25p (I noticed at Heathrow the other day that the cheapest item on the confectionery stall was £2.99). Out of curiosity, I forked out and sat down. After an all-to-brief summary of my virtues, he spent an inordinately long time going over my shortcomings (how dare this complete stranger expatiate on my numerous failings?). Finally, I asked him to look at my lifeline. “You will live long” ….a pause… “but you have a problem. The line forks strongly.” My ears pricked up.  “I see an unpleasant disease… but you will survive it”. “When?”, I asked nervously. “When you are about 65… or before 70, anyway”.  I went away firmly believing I would get cancer.

Forty years of excellent health later (aside from malaria, Dengue and schistosomiasis), we went one evening to have dinner with an old doctor friend in Cambridge. My wife said “Look at Mark’s hand”. My friend watched the shaking and pronounced perhaps a bit to swiftly “Looks like Parkinson’s”. His wife upbraided him saying “How can you possibly diagnose it so peremptorily”’. After a quick call to a colleague (those were the pre-Covid days), my friend arranged an appointment with one of Addenbrookes’ top neurologists. And yes, I was told it was probably Parkinson’s disease (PD). I was 67.

At the turn of the Millennium, I was in Scotland visiting old friends. I popped in to see my old dentist, Walter Scott. Walter only had three interests outside of dentistry: salmon fishing, piano playing, and professionally (and disturbingly), age regression therapy under hypnosis where he would often recount alarming stories of people who could be age-regressed into previous lives, sometimes centuries earlier when patients under hypnosis would speak different languages or long-gone dialects. He proffered no explanation for the phenomenon. By the mid ‘90s, I could see that he had lost some of his youthful vigour but the rapid deterioration in his health shocked me. He ended his life wheelchair-bound, unable to talk or walk, and with loss of control over most faculties and probably with a degree of dementia. Yes, he had Parkinson’s.

Few people understand much about the movement disorder. I knew nothing about it but, having succumbed to it and researched it for eight or nine years, I reckon I could write a Ph.D. thesis on it. There is no history of the disease in my family. It is increasingly regarded as a disorder exacerbated by environmental pollution, whether in our food, water or air. Over one million people live with the condition in the USA with some 90,000 new cases every year; so the numbers are increasing fast. The UK has about 175,000 cases. The risk rises sharply as we get older, mostly affecting adults over 60, though a small number of cases are young-onset. Men are about 1.5 times more likely to develop PD than women, in contrast to Alzheimer’s where women represent two-thirds of all cases.

PD is caused by the brain gradually reducing its ability to produce dopamine, which controls movement and balance. It is produced deep in the centre of the brain in an area called the substantia nigra. Dopamine-producing cells die off and are further destroyed by a plaque of misfolded alpha-synuclein protein, which become clumps of Lewy bodies. Lack of dopamine leads to tremor, muscle rigidity and bradykinesia (slowness of movement). So far, tremor is my worst symptom. I find many things very difficult. Writing is impossible, shaving is dangerous, putting toothpaste onto a toothbrush is as frustrating as putting the cap back on or trying to put a key into a keyhole. Oh, and frustration leads to stress and stress worsens the tremor. The annoying frequency of 4-6 Hz means that if I try and carry a cup of coffee from the kitchen to the sitting room, 90% of it will have gone by the time I reach it. Thank you, Google for “Voice access”.

Dopamine tablets do not help my tremor much and the beneficial effects wear off after a few years. Beyond taking dopamine, is there any other treatment? The best treatment so far seems to be Deep brain stimulation (DBS) where an operation is done involving one’s skull being clamped to a steel grill while wires are inserted into the substantia nigra. This can stop tremor in its tracks but having seen the video, I prefer to shake a bit longer. Newer treatments involve smarter device delivery, or selective and/or improved medications.

If I am going to have an unpleasant disease, at least I should be pleased it was named after a fine-looking polymath, James Parkinson (1755-1824), an English surgeon, physician, apothecary, geologist, palaeontologist of note, as well as a political activist.  In 1817 he wrote an essay on Shaking Palsy, a disease which was eventually named after him. Today Parkinson’s disease and the slightly different Parkinsonism appear to cover a whole spectrum of movement disorders from the benign Essential Tremor to supranuclear palsy (SNP) and multiple system atrophy (MSA), which both lead to rapid deterioration and have a very poor prognosis. 

The adjectives associated with PD are disagreeable: incurable, progressive, degenerative, neurological. PD is staged also: I have stage 1, approaching stage 2 on a bad day. In time, I will get upgraded, or is it downgraded?   Stage one is mild, with symptoms that affect only one side of the body. When symptoms appear on both sides of the body, stage 2 has arrived associated with stiffness, tremors, slowness of movement, all of which become more noticeable. Balance remains intact and one can still live independently. Mouth tremor, drooling and rhinorrhea can start. The voice dims and facial expression vanishes.

The first sign of PD is now believed to be anosmia (loss of the sense of smell) which can occur twenty years before the tremor and that is certainly true in my case. Other obvious signs for me included micrographia (abnormally small handwriting) but not loss of arm swing and facial freezing, which are also common. I do not have some of the other unpleasant symptoms (yet).

Stage 3 is considered a major turning point. Balance issues, dyskinesia and loss of reflexes lead to an increased risk of falls, though individuals are still physically independent and can perform daily tasks. Severe disability develops in stage 4. when walking or standing requires a Zimmer, or what my grandmother used to call her “mobile pulpit”. Full independence is lost, requiring help with daily care.

Let’s be Shakespearian and call stage 5 ‘Last scene of all…second childishness and mere oblivion’ when we are typically confined to a wheelchair or bed and will require around-the-clock nursing. I was happy to hear that many of us don’t reach stage 5, probably because we are already “boxed or fried” as my 93-year-old neighbour terms it.

Is there any cure in sight? Possibly, since new approaches are being developed, notably stem cell culture where dopamine-producing cells are reintroduced into the brain. Every week some new idea or drug is announced, mainly based on work with rats. But let’s not give up: an eternally sanguine and humorous friend has just visited us from Miami and he assures me that with AI, a Eureka moment is just around the corner. We shall see.

A few years ago, I got hold of one of the world authorities on PD on YouTube: Professor Bas Bloem of Nijmegen University, known in Holland as the Gentle Giant on account of his 2.13m (7ft.) stature.  He phones me every year for a long chat and waives his €300 fee[1], possibly because I am his only patient in Africa or possibly because I listen and challenge him. He repeats his long-standing mantra: the best treatment to slow PD progression is exercise. Not just gentle exercise but punishing exercise. My wife enforces the regime daily dragging me along for a 6km. dog walk averaging 6 kph in hilly terrain at 2300m, starting with a rapid ascent of a steep 100m hill. Yes, I sweat. Cycling, swimming and gym complement the routine.

So, my clever palmist, how could you know my fate and how come my future was scribbled on my palm? Or is it all bunkum? Or should I start delving into why ‘psychic’ is almost an anagram of ‘physics’? As Hamlet said, “There are more things in Heaven and Earth, Horatio, than are dreamt of in your philosophy”.

[1] A local neurologist here charged me $250 for a ten-minute consultation and told me there wasn’t much that could be done. Hence the quote from Belloc’s Henry King.